Anita, Kyle & Mateo | Kitchener, ON
Congenital heart disease
“In April, it was snowing and snowing and snowing. As Canadians, we know it’s probably going to snow in April, but when it does, we’re still like: ‘Are you kidding me? Seriously?’
But Mateo, who was three at the time, was full of wonder and joy at it. ‘Mommy, I want to go outside.’ He put on all his winter clothes, took me and his father by the hands, and led us all the way to the park. As we were swinging and laughing on the swing set in the middle of a snowstorm, with the park all to ourselves, I thought: ‘This is so beautiful. And if Mateo hadn’t brought us here, we never would have seen it.’
That’s how it feels every day with him. He’s always going to take us to the next amazing thing, and we’re never going to know we needed it until we get there. He’s taught us that, while the unexpected can be challenging and terrifying, it can also be magical.
“We’re so lucky to be parents to this little warrior, and we’re always looking forward to the next unexpected adventure in this marathon.”
From the moment Mateo was born, there were a lot of unknowns. We knew he had a congenital heart condition, but we had no idea about all the surgeries, the ileostomy, the tracheotomy, the G-tube, and everything else that was going to come. It’s been an ongoing journey of setbacks and discoveries. And, early on, it was overwhelming.
At one point a doctor came up to me and said: ‘This is going to be a marathon, not a sprint. You’re just at the beginning, so you better strap your boots on and get ready for the long road ahead.’ That has always stuck with me and it gave me the perspective I needed to just wipe my tears and be strong because we were in this for the long haul. There’s another bit of wisdom I hold dear that says: ‘You don’t know how strong you are until being strong is your only choice.’ I now believe that 100%.
Getting to that perspective really allowed us to not only be strong but also vulnerable. It means we can take joy freely when joy is available. I can cry and let my emotions out one moment, and then be laughing and happily singing Hakuna Mateo with my child the next. We’re so lucky to be parents to this little warrior, and we’re always looking forward to the next unexpected adventure in this marathon. The next swing set in the snow.”